A Shortened Timeline/ Anniversary of ALS Diagnosis

We are living our lives on a shortened timeline. It is unknown how short, but research says 3-5 years on average. Today is the 4 year anniversary of his diagnosis. 4 years since his formal diagnosis, but really over 5.5 years since symptoms started. The end of 2022 was full of illness for the whole family, including one ambulance ride for Rich, and lots in between. Luckily, there were moments of reprieve during the holidays and we had a lovely time together as a family. We were thankful to receive so much support this holiday season from a very special friend whom we met last year through CCALS, Kelliann, along with her family and friends, and also from HARK ALS.

For 2023, we are going all out, as we never know which year will be our last. We want to go to all the events and have all the fun we can, with the kids and also without. Rich and I have kicked it off with Disney on Ice, an amazing Bruins game, and a very fun family show called Dragons and Mythical Beasts. My 30th birthday is approaching and I am milking every moment of celebration I can! A limo ride to see Hamilton with friends and family, a special date night adventure to Salem (overnight!!), and an evening at a casino followed by yummy food.

I often find myself feeling guilty of receiving support while also spending money on “non-essential” things. Guilty of spending money on dinners, foods I enjoy, guilty of going to the nail salon, guilty of buying show or game tickets, etc.. I have to ground myself and remember what I said above: we are on a shortened timeline. We are living in a totally different reality. We can’t go on a plane ride, we can’t spend a week away; we have these little bursts, little opportunities to do things together, little opportunities for self care and to care for our relationship. There is so much we cannot do, and what we can do takes an enormous amount of extra planning that so many don’t even consider. 

I recently shared some accessibility challenges we faced on social media when going to the Bruins game and I have more to share on the topic. 

Until then, one day at a time, 

Leah

Photo #3 is from a few days after his diagnosis, I was 7 months pregnant with M. Photo #2 was last summer and #1 was last fall at a new accessible tree house!